My involvement in creating a self-help guide for people with dementia

I get really muddled and it’s hard to process tasks and information. I would describe my head as being like a washing machine. Going out on my own is no longer really an option as I get really disorientated and go into panic mode. 

When I’m speaking, quite often I’ll hear the word but not be able to get it out. Talking on the telephone is no longer possible – I can’t hold my train of thought. 

Some days are harder than others. Sometimes you’re OK, sometimes you’re not OK. My husband says that my eyes give away how confused I’m feeling. 

When the doctor said ‘Alzheimer’s’ I went into a really dark hole. I thought my life was over and I’d be at the end stage of dementia in a matter of weeks or months. But now I try to keep as positive as I can. Some things may need to be tweaked, but as long as I can still do some things, I’m happy.

Helpful strategies 

I try to get involved with different projects, to feel like I can still contribute.

Being involved in My Life, My Goals was great. Being able to come up with strategies that would help others, tips on how to cope.  

When you’re diagnosed there’s bagloads of information, but most of it would be from a professional’s point of view. This is from people with dementia and carers, people who know exactly what challenges you’re facing. 

It’s aimed at anybody who is caught up in that dementia cycle. You can look at the bits that are relevant to you there and then. I was involved, but I also use it myself. I would refer back to it if I was having a particularly bad day.

Reading the quotes from other members just perks you up, keeps you going. In the interactive version, you can hit videos and hear people talk about specific goals.

Take control

It’s the goals that I want to set, what I want to achieve, not that somebody else wants me to achieve. It tells me that my life is important and I can take control.  

Maybe start with something really simple, something you know you can achieve easily and see how these steps help you do it better. It will be a good guidance and a good prompt for people to actually start. In quite a lot of cases you will achieve and even go beyond your goal.

Goals that are important to me might not be the goals you would choose. Nobody else is saying what I have to achieve or what goals I have to set.

It’s my life. It’s not my husband telling me what goals I need to set. He can help and prompt as well but the important thing is it's my life and these are my goals. 

Setting goals, even if you fall slightly short of a goal, in quite a lot of cases you will achieve and even go beyond it. Some people might say, 'Well if you set goals, and then you fall short you’re disappointed and de-motivated and lose more confidence'. But I think it works as long as you’re realistic and you’re not expecting to do something that you’ve never done before.

The My Life, My Goals guide might help you realise you have already put some of these steps into place. People who haven’t put them into place yet can be guided on how to start the process.

Cooking was my main thing, I loved cooking, I loved baking. The only way I can do that now is to be exceptionally organised and to work from a recipe. I can no longer remember things that I have made all my life, but that’s fine, it means I can still do it. 

Whenever I’m cooking something I quite often forget to put water in the pot. So that is an important part of every step I’m doing - if there’s water it has to be on that list!

Carers might also want to support a person with dementia to stay as active as they possibly can, rather than doing everything for them. 

I always say, ‘Don’t presume you know what I want – ask me.’ It can be so frustrating when somebody decides to do something for you.  

Positive project 

I was involved with My Life, My Goals right from the very beginning. We discussed what we wanted to put in and how we wanted it to look. Our opinions were taken on board and we were really genuinely involved in it. People voted on the design they thought looked best. 

There’s other projects where you think you’re there as a tick-box exercise, but this was nothing like that at all. It was such a positive project and fantastic resource – you were really proud of the finished article. 

Having goals is very important because you can see yourself being able to do something.

My Life, My Goals is full of ideas and strategies from people who have a dementia diagnosis and they’re telling me I can do some of this stuff. I might not be able to do all of it but I’d be able to do quite a bit of it, with a bit of planning.

You feel a real achievement. It builds your confidence to try something else. My Life, My Goals is personal to you. You don’t have to read it cover to cover. You can dip in and go to the sections that you need.

Hopefully it gives people with dementia hope.

Get your copy of the self-help guide

Download your free copy of My Life, My Goals as a PDF. You can choose to download a digital version and a printable version of the guide. Hard copies are not available to order.